Saturday, March 31, 2018

#NewsDayTuesday: Girl From Ramallah, Palestine Travels to Kentucky for Apert Syndrome-Related Surgeries



A child from Palestine, born with Apert Syndrome, will undergo surgery in Kentucky at Norton Children's Hospital in Louisville. Dr. Ian Mutchnick met Leyan Albazzour while performing neurosurgery overseas in the West Bank. 

Leyan's brain began developing, but her skull did not. She was affected by developmental delays and pain. Dr. Mutchnick could not bear to see her in pain and knew he could help in the form of a cranial vault expansion surgery. 

Learn more about Leyan's experience in Louisville, Kentucky at Norton Children's Hospital in this article. 

2018 Annual Retreat Deadlines & Retreat Program Schedule






Check your mailboxes for these upcoming, important Retreat Deadlines and itinerary sent to us by our intrepid program director, Annie Reeves. Contact her ([email protected]) with any questions you may have about this information. 

Thank you for all that you do, Annie.

IMPORTANT DEADLINES:

May 20th: Deadline to email me a picture for our retreat program. This can be a family picture, picture of your child/children or an individual picture. 

May 30hLast day to book your room at CCA’s discounted rate. Here is the online booking link and our discounted rate is $139 per night, plus tax. https://reservations.travelclick.com/4650?groupID=1695394

May 31st: Deadline to sign up for child care during the Educational Symposium and the Symposium sessions you and your family will be attending. (Will send information for both ASAP)

June 5th: Deadline to let me know which meals you and your family will NOT be eating. 



Daily Retreat Program Schedule

THURSDAY:

Registration: At this time you will check-in with the CCA Staff and Volunteers so we know you have arrived. You will be given a retreat bag full of goodies such as a retreat t-shirts, name tags and more!
Retreat Kick-Off: We will kick-off the retreat with some announcements and introductions. Tacos and Entertainment will be provided for the families.

FRIDAY: 

Breakfast will be provided

Group Meet-ups: During this time, you will have the opportunity to meet other families who have children with your child’s craniofacial syndrome or condition and families who have children within your child’s age group.

Lunch is on your own

Talent Show: Brought back by popular demand! Everyone loved last year’s Talent Show, so we are doing it again this year! If you plan on performing in the Talent Show, please email me the name of the performer and what talent they will be providing. Each performer will have about 2-3 minutes for their performance. Once all slots are filled, I will be sending you an email to gather additional information from you and assign you a time for your performance.
Family Night/Dinner Provided: Every year at the retreat we do a basket raffle during Family Night (which takes place on Friday night) and the families love it, so we are going to keep it around. For those of you who have never been to a retreat, let me explain how this works. We ask our retreat families to bring an item or basket with items which represents your hometown, city or state. Then we number each basket and set a brown paper bag in front of each item. We sell raffle tickets and you simply place your ticket in the bag of the basket you would like to win. Once everyone has purchased their tickets, we hold a drawing for each basket. It's really neat to see what everyone brings each year. Please don't feel like you have to bring something, this is just totally up to you. And last, but not least, if you are bringing an item or basket for our raffle please bring this to registration on Thursday. Registration will be taking place from 11:00am-3:00pm. (If you have any address labels, you might want to bring them with you. It saves you from having to write your name on the tickets. Ticket prices are 20 for $5) Entertainment will be provided.

Teen Night (Ages 13-19): If your teen will be attending Teen Night on Friday, they will be eating dinner with everyone else in the Grand Ballroom. When it is time for Teen Night, will have a place for them and the chaperones to line up outside of the ballroom and then we will walk everyone to the Pool. I am looking for 3-4 Adults to chaperone teen night. If you are interested, please email me.

CCA Adults’ Casino Night (Ages 20 and up): If you are a CCA Adult with a craniofacial condition and will be attending the Casino Night, you will be eating dinner in the Grand Ballroom. You will head to Casino Night at 8:00pm which will be located in the Olympus room.

SATURDAY:
Breakfast is on your own
Zumba: Our very own CCA Dad, Jerry Carchi, will be teaching a fun Zumba class for the entire family!
Group Photo: Each year we do a big group photo. We ask that you please wear your CCA Retreat T-shirt which will be provided in your retreat bag during Registration on Thursday, June 28th.

Pool Party/Boxed Lunches Provided: Everyone will head to the pool for an afternoon of fun. Boxed lunches will only be provided from 11:00am-1:00pm.

Dinner/Dance with DJ and Dinner Provided: Most of our families do dress up for this event, although not required. The attire isn’t formal, more like slacks, summer dresses, etc…

SUNDAY

BREAKFAST PROVIDED: We will give our hugs, say our goodbyes, exchange numbers and start the countdown to the 2019 retreat!

#WonderWednesday: Keeping Wonder Alive in North Dakota





Students in New Underwood, North Dakota met Quinn Kougl and her mom Julia Kougl after reading the book 'Wonder' in school. Quinn is a two-year old born with Treacher Collins like the protagonist in R.J. Palacio's best-selling book. 

The mother and daughter team shared a positive message about differences and acceptance to the students and staff of the New Underwood School. Read more about their message of kindness in this Rapid City Journal article 

Monday, March 26, 2018

From The Bench With Francis: A Craniofacial Sabbatical in Brazil



Dr. Francis Smith


A Craniofacial Sabbatical in Brazil:
University of Sao Paulo Faculty of Dentistry (Sao Paulo) and the Hospital for Rehabilitation of Craniofacial Anomalies/Centrinho (Bauru)
In November 2017, I spent three weeks working in Brazil on sabbatical in both Sao Paulo and Bauru. The main goal was to visit the unique Hospital for Rehabilitation of Craniofacial Anomalies (Hospital de Reabilitacao de Anomalias Craniofaciais, or HRAC), whose campus is also called Centrinho, in the small Brazilian city of Bauru; this is the only hospital on Earth I know of that is solely devoted to craniofacial research and treatment of craniofacial anomalies. I first heard about this hospital when I was visiting a colleague at the University of Dundee Dental School in Scotland in January 2016; he encouraged me to visit this institution and put me in touch with one of the major faculty members there. All three of us began to communicate once I expressed my desire to visit there, and we got the ball rolling on a future visit. At a craniofacial meeting that March in California, I met some new Brazilian colleagues, including a faculty member at the University of Sao Paulo dental school in Sao Paulo. In 2017 when I got enough personal funding, I began making real plans for a visit to Centrinho. My contacts at Centrinho asked if I could spend up to three weeks working with them there, preferably in November, including giving some talks and lectures and visiting clinics and operating theatres. Closer to the time, I informed my new colleague at the Sao Paulo dental school of my plans to come to Brazil and asked if I could visit her as well. She of course agreed. Eventually the plans evolved into spending the first week at the Sao Paulo dental school visiting and giving a seminar, and visiting Centrinho in Bauru the next two weeks.

My first week in Brazil was spent at the University of Sao Paulo (USP) dental school, working with my new colleague there (who is a professor with her own lab) and meeting her colleagues and students. I visited several clinics and departments. I gave a seminar to the faculty and students on my life experience with Treacher Collins syndrome and my research. My new colleague approached me with the possibility of working with her there in the near future. During that week, she also showed me around the huge metropolis of Sao Paulo (population of 12 million, much bigger than New York City’s 8.5 million).
After that first week in Sao Paulo, I went to the small city of Bauru five hours west of Sao Paulo by road. Bauru is physically smaller than my hometown of Fort Wayne, IN, but has significantly more population (almost 370,000 vs. nearly 265,000 in Fort Wayne), thus is also more densely populated than Fort Wayne, with most living in high rise blocks of flats. There, I was introduced to my two new colleagues (to whom I was introduced by my Scottish colleague earlier) who work at the Hospital for Rehabilitation of Craniofacial Anomalies on the Centrinho campus in the middle of Bauru. This unique hospital is solely dedicated to craniofacial research and correction of craniofacial anomalies, and draws children from all over South America. On the Centrinho campus there is also a branch of the USP dental school, and there will soon be a branch of the medical school. The first weekend I was there was an international symposium on orofacial clefts; I had been previously invited to give two talks at this two-day meeting. I gave one talk on my life experience with TCS and another focusing on my research experience. For the next two weeks, I worked with my Centrinho colleagues, visited the new patients’ clinic, and met many of the surgical, dental, medical, and research doctors working there. I visited the dental clinics and even observed two cleft surgeries in the operating theatres. I spent several days assisting one of my new colleagues in her research that involved measuring the upper airway volume in 3-D CT scan images of patients with Treacher Collins syndrome; we hope to publish this research together in the future. A local TV crew came to the campus to interview me, my colleague, and a patient with TCS and his mother for a special programme on Treacher Collins syndrome that they scheduled for release on the same day the film Wonder (translated as Extraordinario for the Brazilian market), in early December. On my final day at Centrinho, I taught a class to dental students on the upper airway obstruction characteristic of Treacher Collins syndrome, using my own artwork (sketches of my own TCS skull and the TCS airway, etc.) for illustration of the jaw deformities and other causes of upper airway obstruction and how it is addressed surgically and otherwise.

I truly enjoyed this unique opportunity and gained experience in research, lecturing, teaching, and otherwise, as well as meeting so many wonderful new colleagues in Brazil.

Wednesday, March 14, 2018

#ThankfulThursday: Southern California Students Give Over $400 in Spare Change to CCA





By Bethany Spellman, Teacher at Highland Academy in Southern California 

Part of a successful education involves teaching students to look beyond themselves and to use their knowledge and abilities to help those around them. Each month, our school emphasizes a specific character trait that we want our students to live out.  Our character trait for December was Giving. When we found out that one of our students, Jordan Watkins, was trying to raise money to help an organization that has helped his family and so many families who have been affected by facial differences, we knew this would be an awesome opportunity to demonstrate giving in a real way.  





When we announced that our giving project was to raise money to help Jordan and the CCA, the enthusiasm and response from the students was overwhelming.  Every day for two weeks, students brought in change.  At the end, they had raised over $400.  

We are so proud of our students for the invaluable life lessons they learn each time they help others.  We are also so privileged and thankful to help the Watkins and the CCA.  Thank you for giving so much of yourselves to affect change, impact growth, and provide hope to so many children and their families.

Help CCA get "Wonder" into more schools, help kids like Jordan and his teacher Ms. Spellman teach lessons that last a lifetime. Click here to donate today!

Harlem Wizards Event in Wylie, Texas on Tuesday, March 20th at 6:30PM



It's March Madness! Whether you love basketball or enjoy comedy, dance, and music, you are guaranteed a fun night at the upcoming Harlem Wizards event in Wylie, TX on Tuesday, March 20th at 6:30PM at Wylie High School. 

The Harlem Wizards are a show basketball team founded in 1962.  The Harlem Wizards are similar to the Harlem Globetrotters, but just a little bit different and a bit more of a grassroots organization. That said, some of their players have hooped it up with the Globetrotters.

They travel the country bringing smiles to kids and adults with their motto "your smile is our victory."

The Wizards are super excited about their upcoming Texas Tour. We will be playing in Wylie, TX on March 20th at 6:30 pm.

Location:
Wylie High School
2250 West Kirby St
Wylie, TX 75098

The Wizards like the rest of the country saw the movie "Wonder" and loved the message of kindness.  They wanted to use their platform to reach out to CCA kids and families and give them 2 hours of pure fun!

Here is a link to our website to learn more about us:  https://www.harlemwizards.com/.  We travel all over the country and have been to 20 countries worldwide.

Contact Manu Iyer if you are interested. They are inviting CCA families to the game for free. They will give you tickets to attend the game and some other Wizards souvenirs.

If you would like to purchase tickets, or want to learn more about the Harlem Wizards, feel free to reach out to Manu. You can find his contact information below:

   
FOR TICKETS CONTACT:

Manu Iyer
Harlem Wizards Event Support
311 E Park St., Suite 2, Moonachie, NJ 07074


Monday, March 12, 2018

#NewsDayTuesday: Learning About Body Image Through Kids Born with Facial Differences






An article published on The Conversation, "an independent source of news and views from the academic and research community, delivered direct to the public," outlines important psychological findings about children born with facial differences. Thankfully, most are positive revelations. Those with facial differences were found to be more mature and accepting of their bodies. Read more in the article to reveal the research that supports these theories.

Three cheers for resiliency and leading the way towards self acceptance.


Saturday, March 10, 2018

#ThankfulThursday: Storm Taekwondo Raises $5,000 for CCA With Kick-A-Thon





Shane Merem of Storm Taekwondo located in Commerce Township, Michigan held a kick-a-thon at his studio with students of all ages and talents, raising over $5,000 for Children's Craniofacial Association. Their efforts will help send Brooklyn Wojtyniak's family, and other families to Annual Retreat and Educational Symposium.

The event was streamed on Facebook. Merem asked the Facebook audience for contributions. Then introduced the kids and adults that would be showcasing their karate kicking skills. Finally, each student had their moment in the limelight as they raised funds with each kick. Prizes were then awarded. Some students even completed a portion of their kicking at home to be sure they made all the karate action happen for their donors.

Merem is a passionate individual. He is very motivated to give the students not only the physical tools for success, but the mental motivation as well. He is force with which to be reckoned. Merem heard about CCA from one of his students, Brooklyn Wojtyniak. The goal was to send her and her family to retreat, but Storm Taekwondo did so much more than that in raising so much awareness and generating so much kindness and helping Brooklyn attain the Retreat Room Reward for netting $5,000.

Generous prize donors offered up incentives for individual and team donors that gave the most money. One team earned the ability to to attend a Red Wings hockey game thanks to Ben Marcum's boss at INTRA Corporation in Westland, Michigan. Looks like these big earners had a great time at the game. 
Top fundraisers at the Storm Taekwando Kick-A-Thon won tickets to the Detroit
Red Wings hockey game. 

Detroit Red Wings
Marcum praises Shane's efforts by saying, "Shane is an amazing Martial Arts Instructor and his school is growing and doing an amazing job developing young kids into champions of life." Marcum also states that Shane recognized how important the Annual Family Retreat and Educational Symposium is to the our families. 


Storm Taekwando Kick-A-Thon Participants


Watch the video of the Kick-A-Thon Live Facebook event by following this link. This is a great model for future fundraisers. If you have a studio, Storm Taekwando is willing to walk you through how to run such a fundraiser.

Storm Kick-A-Thon Participants















A sports or activity-related fundraiser like this allows many people to get involved, give reasonable amounts of money that make sense for them, and can be completed in a number of different venues. It could be any repetitive activity. You could do a dance-a-thon, basketball shot-a-thon, or even a yoga pose--a thon! Each person sponsors a specific number of shots, or length of time that the participant spends completing the activity. People can donate one unit, or more, depending on the metrics you develop.

Excellent job and many, many thanks to Shane Merem, Storm Taekwando, all the kick-a-thon participants, and Ben Marcum for their thoughtfulness and generosity.

Shane (Right) awarding a medal to a student after the
kick-a-thon




By Kara Jackman


2018 Annual Retreat Deadlines and Itinerary






IMPORTANT DEADLINES

May 20th: Deadline to email me a picture for our retreat program. This can be a family picture, picture of your child/children or an individual picture. 

May 30th Last day to book your room at CCA’s discounted rate. Here is the online booking link and our discounted rate is $139 per night, plus tax. https://reservations.travelclick.com/4650?groupID=1695394

May 31st: Deadline to sign up for child care during the Educational Symposium and the Symposium sessions you and your family will be attending. (Will send information for both ASAP)

June 5th: Deadline to let me know which meals you and your family will NOT be eating. (Will send out menus ASAP so you can see what we will be having for each meal.)

Annual Retreat Itinerary 



THURSDAY 

Registration: At this time you will check-in with the CCA Staff and Volunteers so we know you have arrived. You will be given a retreat bag full of goodies such as a retreat t-shirts, name tags and more!

Retreat Kick-Off: We will kick-off the retreat with some announcements and introductions. Tacos and Entertainment will be provided for the families.

FRIDAY

Breakfast will be provided
Group Meet-ups: During this time, you will have the opportunity to meet other families who have children with your child’s craniofacial syndrome or condition and families who have children within your child’s age group.

Lunch is on your own

Talent Show: Brought back by popular demand! Everyone loved last year’s Talent Show, so we are doing it again this year! If you plan on performing in the Talent Show, please email me the name of the performer and what talent they will be providing. Each performer will have about 2-3 minutes for their performance. Once all slots are filled, I will be sending you an email to gather additional information from you and assign you a time for your performance.
Family Night/Dinner Provided: Every year at the retreat we do a basket raffle during Family Night (which takes place on Friday night) and the families love it, so we are going to keep it around. For those of you who have never been to a retreat, let me explain how this works. We ask our retreat families to bring an item or basket with items which represents your hometown, city or state. Then we number each basket and set a brown paper bag in front of each item. We sell raffle tickets and you simply place your ticket in the bag of the basket you would like to win. Once everyone has purchased their tickets, we hold a drawing for each basket. It's really neat to see what everyone brings each year. Please don't feel like you have to bring something, this is just totally up to you. And last, but not least, if you are bringing an item or basket for our raffle please bring this to registration on Thursday. Registration will be taking place from 11:00am-3:00pm. (If you have any address labels, you might want to bring them with you. It saves you from having to write your name on the tickets. Ticket prices are 20 for $5) Entertainment will be provided.

Teen Night (Ages 13-19): If your teen will be attending Teen Night on Friday, they will be eating dinner with everyone else in the Grand Ballroom. When it is time for Teen Night, will have a place for them and the chaperones to line up outside of the ballroom and then we will walk everyone to the Pool. I am looking for 3-4 Adults to chaperone teen night. If you are interested, please email me.

CCA Adults’ Casino Night (Ages 20 and up): If you are a CCA Adult with a craniofacial condition and will be attending the Casino Night, you will be eating dinner in the Grand Ballroom. You will head to Casino Night at 8:00pm which will be located in the Olympus room.

SATURDAY
Breakfast is on your own
Zumba: Our very own CCA Dad, Jerry Carchi, will be teaching a fun Zumba class for the entire family!
Group Photo: Each year we do a big group photo. We ask that you please wear your CCA Retreat T-shirt which will be provided in your retreat bag during Registration on Thursday, June 28th.

Pool Party/Boxed Lunches Provided: Everyone will head to the pool for an afternoon of fun. Boxed lunches will only be provided from 11:00am-1:00pm.


Dinner/Dance with DJ and Dinner Provided: Most of our families do dress up for this event, although not required. The attire isn’t formal, more like slacks, summer dresses, etc…

SUNDAY

BREAKFAST PROVIDED: We will give our hugs, say our goodbyes, exchange numbers and start the countdown to the 2019 retreat!